This
site is dedicated to Danielle Cunningham who was born on March 23, 1960.
She
unfortunately passed away much too early on October 10th, 2009.
Danielle
loved life, her family, her artwork and her cats. This section of the
website
is to tell the story of her health and the many mistakes that were made
during
her care by multiple physicians. This is a very long story but hopefully
it
help others battling cancer who may find themselves in a similar
situation
in the future with their health.
Danielle
was born in Canada in 1960 but within a year her family moved to
Youngstown, Ohio. She spent all of her childhood years in Ohio. In 1976 at
age 16 Danielle developed a growth in her right salivary gland. She had surgery
to remove the growth and it was benign. Two years later the growth returned
and surgery was once again necessary. The tumor was benign again.
Danielle married Rick in 1991 and unfortunately around 1993-1994 the tumor
returned again. This time she had surgery performed in Rhode Island at a
hospital in South County by an ear/nose/throat doctor who was one of Rick's
friends.
The
tumor was benign again. This is where the mistakes began though. After the
cancer was found and after speaking with many physicians and pathologists
and medical professionals, it became clear that radiation should have been
performed on Danielle at this time due to the fact that this was the 3rd occurrence.
Instead nothing was recommended and Danielle was sent home.
The
years went on with nothing happening until January of 2006. Danielle felt
something behind her right ear and she thought it may have come back again.
She went to a doctor at Massachusetts Eye and Ear who did a biopsy on the
growth. It was found to be benign but incredibly the doctor told her to do
nothing because surgery may cause partial facial paralysis.
Danielle
continued to monitor the area and by March she felt the tumor was growing.
She felt somewhat safe though because of what the doctor told her and she
opted to do nothing but monitor it more. By May it had gotten bigger according
to Danielle, and her husband asked her repeatedly to go back to the physician
(his friend) who had performed the 3rd surgery. Danielle refused and the weeks
went on until finally in mid July she agreed to go to see him.
By
now the growth was much larger she felt but incredibly the surgeon put
off the surgery until late October due to scheduling conflicts. Instead of
recommending someone else or telling her to have it removed immediately he
actually waited for 3 additional months to perform the surgery.
The
surgery was finally performed in late October of 2006 and the next week
Danielle was informed that cancer had been found. It was a very rare form
of cancer that apparently only occurs about 8-10 times per year in the United
States. It has a bad prognosis with only about a two year survival rate.
The official medical term for this cancer is
malignant mixed pleomorphic epithelial adenoma of the salivary gland.
If you are diagnosed with this type of cancer you should consider
treatment outside of the United States. There are options specically
in Austria and Germany and to some degree some new options in Mexico.
You may call 1-401-580-8478 at any time if you would like to discuss
some of the international options to treat this. Unfortunately Danielle
arrived too late to Europe and was never treated with those options. We
only learned of these in the summer of 2009 and by then it was too late.
Danielle began undergoing conventional treatment in the fall of 2006. She
had 35 radiation treatment to the right salivary gland and towards the
spine to try to prevent it from spreading. However around June of 2007 Danielle
was feeling pretty good and there was not evidence of cancer at that time,
indicating the first round of treatment had been successful.
However
in November of 2007, roughly one year after diagnosis,
the cancer had begun to spread to her lungs and bones.
Danielle went to the Dana Farber clinic in Boston, Massachusetts for
additional opinions. Dana Farber actually found that the cancer had
spread to her bones in the spinal area just one week after a CT-SCAN
from a hospital in Rhode Island only found the lung metastases. It is
CRITICAL for cancer patients to realize that this can happen.
Getting scans from at least TWO reputable hospitals should be considered
to catch everything as early as possible. The scans most likely will differ.
At this point Danielle was realizing that they were not doing much for her
in the United States. She did undergo 14 radiation treatments for the tumor
in her back and also underwent another round of chemotherapy of the same
type but at a stronger level. However about 1/2 way through the chemotherapy
she decided to go to Mexico for alternative cancer treatment in January of
2008.
She
stayed in Mexico at a cancer clinic for 3 weeks and when they did scans
on the final day the tumors had shrunk or seemed to be non-active so it seemed
like this was a success. They put her on a take-home plan of care which included
a lot of pills and supplements and vaccines. They requested that she return
in
June of 2008. Danielle then decided to resume her chemotherapy treatments.
This
round of chemotherapy was very difficult for Danielle and took a lot out of
her. She was extremely weak when it came time to go back to Mexico in June
of 2008. However she did go, flying to San Diego and taking the shuttle over
the border to Mexico. The treatments seemed to go well again and she felt
better in late July of 2008 when she returned. She was put on more vaccines
and in August of 2008 she had a Ct-Scan done revealing only a relatively small
tumor in her lungs. She decided to have an RFA procedure done on it.
RFA
is Radio Frequency Ablation where the doctors put in a thin device into your
skin and then it clamps around the tumor. The tumor and marginal surrounding
areas are then heated to roughly 200 degrees. The tumor disintegrates and
the procedure usually only takes about 30-45 minutes. It is much less painful
for the liver than the lungs. Danielle was in pain in her lung area for weeks
after the procedure which was done in early September of 2008.
A
CT-Scan was then done a few weeks later in late September did show that
there was no evidence of cancer. Unfortunately the doctor told us that
quite often when a single tumor is growing there is a mechanism which
actually "shuts off" development of other tumors, while the
main tumor is growing. He said after the main tumor is destroyed
that often other tumors will start to grow that were dormant.
That
is what seems to have then occured. However Danielle's vaccines
from Mexico ran out in late October and she was supposed to have
gone back for more in November but she did not. She was tired and
the holidays were coming and she opted to not go back. However she
started having a lot of pain in her right elbow around late November.
She went to the doctor who did the RFA procedure and he did and x-ray
on the arm and found nothing. THIS is a critical point for all cancer
patients. X-rays do NOT always find cancer. You need to get an MRI or
a CT or PT-Scan to confirm if there is cancer. Danielle went home
feeling at least it was not cancer in her arm but the reality was in
time it WAS in fact found to be cancer in her right elbow area.
She also went to her oncologist and he said it was tendinitis. Another
week or so went by and we went back to the oncologist and he sent
Danielle to an orthopedic surgeon in Warwick, Rhode Island. He
told Danielle that she needed physical therapy for her arm and
that would help her pain. He did an x-ray that day and said there
was no cancer and gave her a script to see a physyical therapist.
Danielle's pain had gotten almost unbearable and around January 10th,
2009 we called the orthopedic doctor. It was a Saturday and his backup
was on call and we INSISTED on getting an MRI on her arm and that
doctor agreed. It was done on a Saturday and we had the results to
be sent to the RFA doctor, the oncologist, and the orthopdic doctor.
The MRI people said it would take 48 hours but by Tuesday all of the
doctors would have the results. We called the oncologist on Tuesday
and he said from the report he read that there didn't seem to be any
cancer. Then we called the orthopedic doctor and he agreed with the
oncologist. At that point we did not call the RFA doctor but we
knew he had the results.
Danielle
continued to have very serious pain in her arm and it worsened at
night. This is a great tip for anyone out there, if you have bone pain and
it
worsens at NIGHT then there is a good chance it could be cancer so have
an MRI or CT-SCAN done quickly. Not knowing what was really going on
after the 2 doctors said it wasn't cancerous Danielle considered going
for the physical therapy.
But
incredibly one week AFTER the MRI was done later on January 17th
while opening a small can of Ensure she heard a crack and was in
complete agony as her right elbow had broken due to the cancer.
We called 911 and it took the 2 technicians almost 30 minutes to
find a way to get her arm into a sling through the intense pain.
Danielle spent about 5 hours at the hospital late night and into
the early morning hours, her two children were there with her as
well as her husband. They finally were able to stabalize the arm
and they had to cut off one of her rings due to swelling in the
entire arm/hand. It was actually Danielle's idea to cut off the
ring to minimize the pain as they tried prying it off with no success.
Then after that horrifying weekend, the phone rings on Monday and
it was the RFA doctor who called to inform us that the MRI showed
cancer in Danielle's elbow/arm. All of the pain and sufferineg
could have been avoided with a timely and accurate diagnosis of the
MRI taken nine days ago. It is incomprehensible what they put Danielle
through due to their complete negligence.
A CT/Pet Scan revealed next week that the cancer had spread to many
other places in her body. At this point Danielle felt she needed to
leave Rhode Island and she decided to go to the CTCA in Philadelphia,
which is the Cancer Treatment Centers of America. She arrived there
in late January and stayed for about 5 weeks and received mostly all
radiation treatment.
Their promises of new bio-tech drugs to help her never
played out as all she got was radiation to the areas that were in
need. It was only on OUR recommendation that they used
Bevacizumab (AvastinŽ). We specifically recommended this
to the oncologist at the CTCA and he said we could use it.
Amazing that WE had to suggest it. They also operated on
her broken arm and were supposed to get a sample to send
to their California lab for resistance testing to see what
chemotherapy drugs would work best but a week later they
said the sample they took on the operating table was too
small and could not be used. What a joke that was also.
Danielle arrived back from the CTCA in early March of 2009.
Rick had been talking with the Landmark Medical Center in
Woonsocket, RI and they said that Danielle may respond to
Erbitux (cetuximab) so Danielle agreed to try it starting
in mid March. Rick suggested to her to go directly to Mexico
for additional treatment as he felt the Erbitux was nothing
more than an experiment by the oncologist.
He
asked her to leave the day she returned from the CTCA. She
did not want to go at that time though so she started the
treatment as well as using the bisphosphonate Zometa
which is supposed to strengthen the bones and help to
prevent the cancer from spreading.
Rick was not confident at all in this ongoing "experiment"
as he called it and had lined up another trip to Mexico to
a different clinic that the prior 2 visits to Mexico. There
were 2 highly regarded clinics and they had chosen one over
other both times but this time they thought they would try
the other and Danielle had finally agreed to go. It was
the same clinic he wanted her to go to in March upon her
return from the CTCA which she had refused at the time.
The Zometa did prove to be worthless as was the Erbitux. After
taking both from mid March 2009 thru the end of May 2009 a
CT-PT/Scan revealed the cancer had spread considerably and
now was in Danielle's liver as well as worsening in her lungs.
At that point a major mistake was made as the oncologist
suggested going on a triple strength regimen of Taxol, 5-FU
and Cisplatin.
Rick was against this but Danielle went along with the
oncologist and at the end of May took the first and LAST
triple dose of those 3 agents. Combined this nearly killed
Danielle and she was such an incredibly weakened state she
stated she wanted to kill herself.
Unfortunately
this was
also at almost the exact same time Rick had contacted a
doctor in Germany who had some degree of evidence that he
could help Danielle. It was by far the most concrete way
of treating the salivary gland cancer that Rick had seen
in the almost 3 years of speaking with doctors worldwide.
Rick was convinced this was the best course of action
after speaking with the doctor in Germany and asked Danielle
to go directly to Germany instead of to Mexico at this time.
Unfortunately Mexico was inpatient services and Germany was an
outpatient setup so she opted to go to Mexico and Rick and Danielle
arrived there on June 15th, 2009. The stay was for 3 weeks but
there were signs that she was getting worse so when they arrived
back home they went almost immediately to Germany.
However Danielle's immune system was so compromised by now that
the doctor in Germany needed to spend 3-4 weeks working to fix
that and she was never able to get the treatment which they both
believed would have helped her. She returned home in early mid
August of 2009 and by late September was in hospice care.
Danielle passed away on October 10th, 2009. She left behind her
husband Rick, their two children, Natalie (who was 11 1/2) and Luke
who had just turned 7). She also left behind her mother and her sister
as well as her two brothers, all from the New England area.
Danielle was incredibly courageous throughout the entire ordeal,
showing a bravery and strength that Rick had never witnessed before
in any human being. Her efforts were herculean and deserved a
much better fate than she received. Her efforts were such that
cannot be described here for lack of time and space.
She was very religious and believed till the day she passed away that
she would be with Jesus soon, and told Rick that often. If anyone
truly belongs in heaven it is surely Danielle Marie-Jeanne Cunningham.